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BackgroundMethodsFindingsConclusionsAdults with intellectual and developmental disabilities (IDD) often have behavioral support needs that must be met in order to live in community settings. Pharmacotherapies are often used to meet such needs. We explored factors that predict medication for behavioral support among adults with IDD.We integrated three major U.S.- based IDD-specific datasets over multiple years, creating a large dataset. We used machine learning to build and test an algorithm to predict factors associated with the use of pharmacotherapies to address behavioral support needs for adults with IDD.Our algorithm correctly predicted the use of pharmacotherapies with about 79% accuracy. Top predictors of medication use to address behavioral support needs included disruptive behavior, use of medication to treat a mental health condition, and presence of an autism diagnosis.Use of behavior plans should be given more attention in conjunction with medication use, especially in relation to managing disruptive behavior. [ABSTRACT FROM AUTHOR]

Having a sense of social inclusion and belonging, typically characterized by our personal relationships and community participation, is the central essence of life for most people, yet it remains elusive for many people with intellectual and developmental disabilities (IDD). This article summarizes the work of a diverse group of researchers and advocates to propose 6 big-picture, equity-based goals to drive future research in the field: (1) understanding the role of intersectionality, (2) understanding intimate relationships, (3) promoting formation of communities of care to support social inclusion, (4) understanding life course trajectories of social inclusion, (5) understanding social inclusion in virtual spaces, and (6) understanding how to promote social inclusion in the entire research process. [ABSTRACT FROM AUTHOR]

People with intellectual and developmental disabilities (IDD) have higher incidences of mental health conditions and behavioral support needs than people without IDD but may not receive needed care from community providers. We examined rates of co-occurring conditions in a representative sample of adults with IDD who use state funded services in Virginia. Using data from two datasets, we identified four categories of mental health and behavioral conditions. We used these categories to examine differences in individual- and system-level factors in people with and without co-occurring conditions. We found high rates of co-occurring conditions in our sample. We found important disability factors and system-level characteristics that were associated with having a diagnosed mental health condition or behavioral support needs. Differing patterns of diagnosis and treatment for co-occurring conditions suggests more work needs to be done to support people with IDD and co-occurring mental health conditions living in the community. [ABSTRACT FROM AUTHOR]

BACKGROUND: People with intellectual and developmental disabilities (IDD) tend to have poor employment outcomes relative to the general population, as do people with autism. Research is unclear, however, about how people with IDD with and without autism compare on a variety of employment-related indicators, including desire to work, having work as a goal in their service plans, and being employed. OBJECTIVE: To understand how people with IDD with and without autism compare on important employment-related outcomes, based on a matched random sample. METHODS: Using merged administrative datasets, we used propensity score matching to construct statistically proximate samples of Medicaid waiver users in a single state with IDD both with and without autism, and then tested differences between the two groups on important employment-related indicators. RESULTS: People with IDD and autism were less likely than people with IDD alone to have a goal for employment in their individualized service plans and to hold employment in group community settings. There was no statistical difference between the two groups in terms of desire to have a job or employment in individual community settings. CONCLUSION: Results reinforce the importance of planning for employment if holding employment is a person's aim, regardless of the presence of autism. [ABSTRACT FROM AUTHOR]

People with intellectual and developmental disabilities (IDD) may be at an increased risk of severe illness and death from COVID-19. This article examines the role of information and knowledge in COVID-19 vaccine uptake for people with IDD and their families. We developed a survey about COVID-19 vaccine uptake, confidence, and knowledge for people with IDD and their families. COVID-19 vaccine uptake was associated with higher self-reported knowledge about the vaccine, learning about the vaccine from one's doctor, and social media use. Qualitative results reflected the importance of trusted relationships with medical providers in vaccination. [ABSTRACT FROM AUTHOR]

Vietnam ratified the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2015, signalling a commitment to the basic human rights of citizens with disabilities. Previous research has shown people with disabilities in Vietnam to be marginalised in society, often with limited educational or work opportunity, and with limited financial means. Using in-depth semi-structured interviews conducted in Vietnam and a thematic analysis approach to data interpretation, this article examines the current status of people with disabilities in Vietnam in relation to the core elements of the CRPD, from the perspectives of people with disabilities, their families, and professionals who support them. Findings suggest that, while Vietnamese society has made strides supporting people with disabilities, work remains to be done for the country to comply with the CRPD's core principles. Suggestions for future action are offered, including ways to support human rights of people with disabilities within cultural contexts. [ABSTRACT FROM AUTHOR]

A nuanced understanding of disparities impacting racialized people with intellectual and developmental disabilities (IDD) requires scholars employ research methods that make visible the structural factors that influence outcomes. Following the work of Tukufu Zuberi and Eduardo Bonilla-Silva, we explore race-based methodological considerations for disparities research with Black people with IDD. Specifically, we discuss (a) structural racism in research methods, employing disability critical race theory as a framework, (b) the absence of Black voices and Black scholarship, (c) the abstraction and misuse of race as a variable, and (d) mapping race as a point of discussion in the IDD discourse. Implications for research are discussed and recommendations for contextualizing race, ensuring equity in representation and dissemination, and amplifying the voices of Black scholars are provided. [ABSTRACT FROM AUTHOR]

A correction is presented to the article "Co-Occurring Mental Illness and Behavioral Support Needs in Adults with Intellectual and Developmental Disabilities" published in a previous issue of the periodical.

People with intellectual and developmental disabilities (IDD) often rely on Medicaid-funded services and supports to facilitate their daily living. The financial investment for these services is significant, yet little work has been conducted to understand how these investments affect life outcomes. This pilot study used a novel data integration approach to offer initial insights about how Medicaid expenditures relate to outcomes using Medicaid claims data, results of the National Core Indicators consumer survey, and data from the Supports Intensity Scale (SIS). Findings suggested that subpopulations of people with IDD who also had high behavioral needs or high medical needs had significantly higher expenditures than individuals with more typical SIS-assessed support needs. Regression analyses suggested mixed outcomes based on the factors we considered, including a finding that people with IDD who lived in sponsored residential care homes were more likely to engage in inclusive activities in the community than those who lived in larger congregate settings, or those who lived in a family home. Results of this pilot, when brought to scale, will be useful in examining the performance of state IDD service systems over time. [ABSTRACT FROM AUTHOR]

Case management (CM) is one of the most commonly used services by individuals with intellectual and developmental disabilities (IDD), but little is known about the workers who provide CM. This study used a mixed methods approach to gain understanding of the CM workforce in one U.S. state. An online survey was completed by 35 IDD service directors (87.5% of directors in the state); and 113 CMs and CM supervisors participated in semistructured interviews and focus groups. Results indicated an annual crude separation rate of 28.2%, and participants often complained that turnover resulted in caseload sizes that prevented optimal outcomes for people with IDD. A limited applicant pool, duties focused on regulatory compliance, and inadequate wages were cited as major challenges for CMs. [ABSTRACT FROM AUTHOR]

Self-directed home and community based services (HCBS) waiver services and supports for people with intellectual and developmental disabilities (IDD) have become a viable and widely used method of service provision in the United States. Grounded in theories of self-determination, previous literature on self-direction has suggested high satisfaction and positive outcomes for people who use self-directed programs as well as cost savings for state IDD service systems. This study explored the ways in which state IDD service administrators think about how self-direction may be used as a method of achieving cost savings while providing opportunities for people with IDD and their families to exercise choice and control. Informed by 54 high-level IDD service administrators in 34 states, and guided by a thematic analysis approach to data interpretation, the study found evidence that administrators typically see strong potential for self-direction to have cost-savings benefits, while also fostering choice. In the current political climate, the need for cautious fiscal stewardship may become a stronger driving force behind self-direction for people with IDD in the United States. [ABSTRACT FROM AUTHOR]

Families of children with autism spectrum disorder (ASD) play a central role in selecting interventions for their children. Despite the importance of understanding the factors that motivate early decisions about treatment, the literature has concentrated little attention on how and why parents of young children with ASD make decisions about services and supports. Using a collective case study design informed by a diverse sample, this study found a heavy reliance on formal and informal sources of support in guiding parents’ early treatment decisions for their young children with ASD. The Internet also served as a primary source of informational support to families. Findings highlight the importance of family support initiatives including peer-to-peer family mentoring and decision support aides to assist families in critically evaluating online and print information regarding ASD. [ABSTRACT FROM AUTHOR]

OBJECTIVE: This article reports the findings from focus groups conducted with individuals who have spinal cord injuries (SCI) about their experiences with employment. The purpose was to obtain perspectives regarding their perceived barriers to employment and the supports that they need to achieve their employment goals. METHODS: Focus groups were conducted at scheduled times via telephone with 31 individuals with SCI; 16 were employed; 15 were unemployed. The recorded calls were transcribed and analyzed using NVivo10. RESULTS: Narratives from the focus groups revealed a number of trends related to the factors that facilitate and challenge employment for people with SCI. Content analysis resulted in four primary themes related to facilitation of employment: (a) learning to be a strong self-advocate, (b) acquiring job-specific training, (c) networking effectively, and (d) putting necessary supports in place. The participants' narratives also uncovered a number of barriers that a person with SCI must overcome in order to secure employment: (a) transportation issues, (b) difficulties with accommodations, and (c) perceptions of discrimination based on disability. CONCLUSIONS: This research was the first phase in a multi-phase research study on identifying and implementing knowledge translation (KT) strategies for increasing employment outcomes for individuals with physical disabilities. This research began identifying what individuals with SCI see as barriers and facilitators to successful employment and how people with disabilities obtain their information on supports and services. [ABSTRACT FROM AUTHOR]

People with multiple sclerosis (MS) are known to face a multitude of challenges in the workplace and when seeking employment. Less has been written, however, about the subjective experiences of people with MS regarding their workforce participation. This study used phone-administered focus groups to investigate work-related experiences of a national sample of individuals with MS. Using a conventional qualitative content analysis approach, the researchers derived a set of three core themes, each with subordinate sub-themes. The three core themes were: (a) facing future uncertainty, (b) feeling a sense of loss, and (c) navigating the workplace. Findings are discussed within the context of existing literature. [ABSTRACT FROM AUTHOR]

Social inclusion for people with intellectual and developmental disabilities (IDD) is an issue of emerging importance in research, policy, and practice. Though strides have been made to improve community living, inclusive education, and improved employment opportunities for many individuals with IDD, social inclusion has been slower to evolve. A diverse group of stakeholders met at the National Goals 2015 Conference to develop the following set of goals designed to promote better social inclusion in the next 10 years: (a) develop measures for social inclusion, (b) examine how personal and community contexts shape inclusion, (c) embed measures of inclusion in research about other life domains, (d) build capacity for social inclusion, (e) identify best practices for promoting inclusion from the community perspective, and (f) understand life course trajectories that impact inclusion. The goals are discussed in more detail in this article. [ABSTRACT FROM AUTHOR]

Turnover among direct support professionals (DSPs) in community support settings for individuals with intellectual and developmental disabilities (IDD) has been regarded as a challenge since tracking of this workforce began in the 1980s. This study utilized a group randomized controlled design to test the effects of a competency-based training intervention for DSPs on site-level turnover rates over a one year period. Results suggested that, compared with the control group, sites receiving the training intervention experienced a significant decrease in annual turnover, when multiple factors were controlled. Implications, including the importance of considering quality training as a long term organizational investment and intervention to reduce turnover, are discussed. [ABSTRACT FROM AUTHOR]

Direct support professionals (DSPs) and frontline supervisors (FLSs) play an integral role in the lives of people with intellectual and developmental disabilities (IDD) and are often the individuals directly responsible for assisting people with IDD to live and fully participate in their communities. These two groups of workers have typically been employed at lower wages with limited access to fringe benefits, contributing to high rates of turnover compared to a similarly skilled worker in the United States. This article summarizes findings and is the first investigation in several years to systematically examine the wages, fringe benefits, and stability of the DSP and FLS workforces supporting individuals with IDD. Findings suggest that a typical DSP may expect to earn about $11.25 per hour, while FLSs may expect wages of about $15.45 hourly. Of concern, however, is that fringe benefit provision was quite limited in this sample. Implications, including relation to past reports of DSP workforce development, are discussed. [ABSTRACT FROM AUTHOR]

The Hmong, who began migration to the United States of America in the latter half of the 1970s, represent a largely unstudied segment of the Asian-American population. Traditional practices such as teenage marriage were widely reported in the early years after migration began, but have been left relatively unexamined more recently. Explicit focus on Hmong women has been largely absent in recent research. This paper examines the relationships between marriage patterns, education and earnings among Hmong women in the United States. Using results from a survey of 186 Hmong women, the results of this study indicate high rates of teenage marriage, as well as associations between early marriage, marital abuse, and both low earnings and lower levels of educational attainment among women married as teenagers compared to Hmong women who waited until adult age to marry. There were signs of encouragement, including higher than anticipated rates of educational attainment among the sample overall. Marital stressors such as spousal abuse remain prevalent, especially among Hmong women who married in their teenage years. Implications of this research are discussed for both practitioners and for future directions in research within the Hmong-American community. [ABSTRACT FROM AUTHOR]

•Summary: An online survey was completed by Hmong women in the United States (n = 186). The survey was distributed via listserves and websites frequently used by Hmong women, and solicited information about marital factors, presence and intensity of depressive symptoms, and socio-demographic circumstances.•Findings: The findings of this article indicate a significant relationship between marital abuse and depression among women married as teenagers when compared to non-abused women who married in adulthood. Excessive worry and feeling like everything takes great effort were the two most frequently reported indicators of depression reported by Hmong women in this sample. Additional marital and socio-demographic factors are explored in their relationship with depressive presentation.•Applications: These findings suggest that mental health practitioners working with Hmong women may need to be particularly attuned to issues of marital stressors related to traditional marriage practices and cultural stressors. [ABSTRACT FROM PUBLISHER]

Researchers used a merged dataset to examine if more resources were expended on those with greater support needs and if support needs impacted personal outcomes when controlling for relevant personal and contextual factors. Results indicated that the amount of support a person receives had a direct relationship to their needs. However, we also found that people with the greatest needs had weaker personal outcomes suggesting that distribution of resources based on need may not result in equivalent outcomes. The authors suggest strategies at an individual and systems level to address the outcomes gap for people with the greatest support needs. [ABSTRACT FROM AUTHOR]

Self-directed programs that allow individuals with intellectual and developmental disablities to exercise greater control over their finances have become increasingly common in recent years. At the same time, challenges in the recruitment, retention, and training of direct support workers in the field have grown more acute. In this article, the authors investigate the status of the direct support workforce for people using self-directed supports in 1 Midwestern state, based on the results of a statewide survey of service users. Although additional research is needed, the results of this study suggest that people who use self-directed funding options are satisfied with their ability to direct staffing, though challenges remain. Among these challenges, the presence of higher than expected wages but lower than expected benefits provision compared with traditional services may have serious policy and staff retention ramifications that affect the long-term viability of self-directed funding options, In addition, staff training remains a challenge, with service users in this sample reporting low rates of training beyond a general skill set. Implications of these findings are discussed. [ABSTRACT FROM AUTHOR]

Incivility within social work education reflects patterns seen across higher education and within society. Previous work has found that social work faculty are reluctant to report incivility and have limited confidence in their ability to address it effectively. In order to address potential solutions, this paper uses qualitative data (n = 164) drawn from a larger survey of social work faculty in the United States. The exploratory analysis focuses on strategies social work faculty use when experiencing incivility and bullying themselves, and methods recommended by social work faculty to confront incivility administratively and systemically within the social work academy. Responses were coded into four themes: values-based responses, leadership/institutional responses, individual and faculty level responses, and faculty disengagement. These themes suggest opportunities and recommendations to move toward a civil social work academy. Academic faculty expect institutional leadership to have the skills to acknowledge and address incidents of incivility in the workplace. Social work faculty suggest a combination of values-based responses that tie workplace behavior and culture to professional values, institutional responses that support accountability and formal recognition for prosocial behavior, and establishing and maintaining positive relationships in the workplace. Social work faculty acknowledge and affirm the individual ethical mandate to address injurious workplace behavior and challenge institutional systems and patterns that reinforce workplace incivility. [ABSTRACT FROM AUTHOR]

Despite the detrimental effects of incivility in the workplace, relatively little research examines peer-level incivility in social work education. Incivility literature from multiple countries has established that within the academy, individuals' bad behaviors coupled with nonexistent, weak, and inconsistent institutional policies as causes of the problem. This study analyzes qualitative data (n = 164) drawn from a larger survey (n = 243) collected from faculty members in social work education programs in the United States. The study explores personal experiences with incivility among social work faculty. In addition to the professional and personal impact of workplace incivility, three other themes emerge from these data: a discussion on how incivility occurs, the causes of incivility, and the role power and hierarchies have in supporting environments where these behaviors thrive. This study finds that incivility within social work education has negative long-term outcomes with implications for future job prospects, hiring decisions, and tenure and promotion. These data also confirm that consequences of microaggressions in the workplace are as harmful as overt acts of incivility. The study concludes with opportunities for leaders in social work education to identify and address individual behaviors while also assessing and addressing institutional oversight and response systems. [ABSTRACT FROM AUTHOR]

This study tests an empirically derived model for measuring personal opportunities for people with intellectual and developmental disabilities (IDD) using National Core Indicators In-Person Survey (NCI-IPS) state and national datasets. The four personal opportunities measured, (a) privacy rights, (b) everyday choice, (c) community participation, and (d) expanded friendships, were informed by existing conceptualizations of service as well as NCI-IPS measures. Analyses confirmed the fit of a four-factor model and demonstrated that factors were significantly and positively correlated. To demonstrate the relationships between personal opportunities and personal and environmental characteristics, we estimated a structural equation model that regressed personal opportunities on age, gender, place of residence, and level of intellectual disability. Implications for using personal opportunities for evaluating service quality of IDD systems are discussed. [ABSTRACT FROM AUTHOR]

This study investigated parental perceptions of the early signs, age of initial concern, age of diagnosis, and age of initial intervention for children with Autism Spectrum Disorders (ASD) in mainland China. A sample of 146 Chinese parents of children with ASD responded to an online survey. The findings suggested that parents were concerned about their child's development at a mean age of approximately three years, obtained an initial diagnosis at an average age of four years, and procured intervention for their child at an average age of four years-three months. The results also revealed that early indicators of ASD validated in the United States were among those used by Chinese parents, though some early signs may gain particular salience in the Chinese context. Additionally, educational implications and areas of future research are discussed. [ABSTRACT FROM AUTHOR]

National policy and litigation have been a catalyst in many states for expanding personal outcomes for people with intellectual and developmental disabilities (IDD) and have served as an impetus for change in state IDD systems. Although several metrics are used to examine personal outcomes, the National Core Indicators (NCI) In-Person Survey (IPS) is one tool that provides an annual depiction of the lives of people who receive Medicaid Home and Community Based IDD waiver services (HCBS). This article examines whether a validated, three-factor (Privacy Rights, Everyday Choice, and Community Participation) measure of Personal Opportunity, derived from NCI items, functions as predicted across non-equivalent, NCI cohorts (N = 2400) from Virginia in 2017, 2018, and 2019. Multiple-groups confirmatory factor analysis (CFA) was employed to examine the invariance and generalizability of the Personal Opportunity constructs. Results indicated that Privacy Rights, Everyday Choice, and Community Participation measured the same concepts even when time and group varied. Significant improvements in Privacy Rights and Community Participation were observed when comparing latent factor means across years. Findings provide stakeholders with a tool for interpreting personal outcomes in the contexts of policy and practice intended to improve inclusion and quality of life for adults with IDD. [ABSTRACT FROM AUTHOR]

BACKGROUND: Extant research has reported on the factors associated with seeking and maintaining employment for individuals with different types of physical disabilities, such as cerebral palsy (CP), multiple sclerosis (MS), and spinal cord injuries (SCI). Some of these factors are barriers and others are facilitators. However, research has not determined whether the inhibiting and facilitating employment experiences of people with physical disabilities are similar across type of physical disability. OBJECTIVE: The goal of this study was to compare the employment experiences of people with physical disabilities with three different disabilities including CP, MS, and SCI to determine whether these employment experiences are similar. METHODS: Homogenous focus groups were conducted with individuals with CP, MS, and SCI concerning their employment experiences. These 18 focus groups were conducted telephonically, audio recorded, and lasted approximately 60 minutes each. Data from each disability type was analyzed separately and across disability type. RESULTS: Two themes were common among participants in the three disability types: 1) Health and 2) Barriers to Overcome. However, there were differences among the disability types within these themes. Some of these differences were unique to MS. CONCLUSIONS: This study provides a perspective on working with CP, MS, or SCI informed directly by individuals living with these disabilities, whether they were employed or unemployed, and gives a voice to the employment experiences of the individuals. The findings present information on the similarities and differences that individuals with various physical disabilities face when working. [ABSTRACT FROM AUTHOR]